Recessive Dystrophic Epidermolysis Bullosa (EB) is an extremely rare condition that causes enormous suffering for affected patients. Children born with RDEB are called ‘butterfly babies’ as their skin is seen to be as delicate and fragile as a butterfly. Their gene for making collagen has a fault in it resulting in severe wounds in their skin, mouth and throat leading to blistering or skin loss at the slightest friction or knock. It is progressive and very painful.